Data sharing: HIV status and confidentiality

Patients must be better in formed about what is happening to their data

NHS data sharing has gained significant attention recently, among patients as well as in the medical and national press.

Serious concerns have been raised around the government's proposals to extract identifiable medical information from primary care practices, known as the care.data programme. The BMA and other professional groups are concerned about how little patients understand about this and what would happen to their records after extraction takes place.

NHS England has now announced that it will be delaying care.data until it can raise awareness among patients about the implications of the programme, the benefits of greater information sharing, protections to maintain anonymity and patients' options for opting out.

However, apart from this potential expansion of access to information, there is already a significant lack of understanding among patients of how their personal confidential information is handled and who currently has access to their data.

Survey of HIV patients

National AIDS Trust (NAT) surveyed 245 people living with HIV to assess what they knew about how their medical records were handled and who had access to them.1

NAT also conducted two consultation meetings, in Manchester and London.1 The survey and the meetings covered a wide demographic range in terms of age, ethnicity, sexuality and gender.

Many HIV patients are active and involved in their care; however, half of those surveyed did not know whether their HIV clinic records were kept separately from the wider records of the hospital trust. A significant proportion were unaware of how widely their records were shared within the NHS.

Similarly, in relation to the important concept of 'implied consent'

for sharing personal information with other healthcare staff, 46% of those surveyed were unaware of this concept and a further 15% were unsure about it. When the current confidentiality procedures were explained to the survey respondents, most seemed content with what is meant to be standard procedure.

In fact, many preferred to have their health information shared among relevant medical staff, because they recognised this could enhance their care and meant they did not have to repeatedly disclose their HIV status.

Case study

Tom was diagnosed in 2011. He says: 'I worried about my HIV medication interacting with my other medication, so I decided to let my GP know I had been diagnosed positive. When I next went to see my GP, I went to check in at reception and saw they had the patients' files for that day out where everyone could see. My file, with my name and address, was on top and someone had written HIV+ across the front page in big red marker pen. It was a shock. I was angry and upset. I complained to the PCT, which sent the practice staff on sensitivity and confidentiality training. I also received an apology, on behalf of the GP surgery, from the PCT. I changed GP after that and I've had no problems with my new one.'

Changes to record-keeping

Information pertaining to patients' HIV status and treatment has always been afforded great protection in the NHS, with GUM clinics keeping data on patients' diagnosis and treatment on a separate record from their general medical information.

However, there is a groundswell of support for GUM/HIV clinic records to be brought under the NHS number. There are many benefits to this.

It would be an essential safeguard in matching patients accurately to their records and communications between professionals in different healthcare settings.

We could monitor how well the NHS is performing and whether it is meeting the needs of people with HIV across its services.

There is also an important element of patient safety when it comes to harmful drug interactions, allergies and ensuring better understanding of the patient's medical history.

Best practice

Patients must be better informed about what is happening to their medical information.

NAT's research found that 54% of respondents had never received written information on NHS confidentiality procedures and 46% had never had a conversation about it with a healthcare professional.

For those who had received written or verbal information, 49% and 43%, respectively, said it did not answer their questions.

Ensure you are having those conversations with your patients and supplying them with clear take-home information where you can.

An important element of these conversations is the difference between implied and explicit consent. In my experience, patients can find themselves surprised by implied consent (and this is the default position with data on GP systems, as well as when an NHS number is used across providers).

HIV-related stigma must be addressed. NAT's research showed a significant proportion of people faced stigmatising attitudes and behaviour relating to their HIV status in medical settings.

This behaviour included patients being asked how they got HIV, or experiencing refusal or delay in operating or providing treatment, inappropriate discussions about lifestyle, and being made to feel 'inferior' in some way.

Forty per cent of survey respondents had experienced differential treatment on the grounds of their HIV-positive status.

For patients to feel confident sharing information about their HIV status, they need to feel sure that disclosure will not have a negative effect on their care or treatment. One way of addressing this at practice level is to ensure all of the practice team, including administrative staff, are involved in regular whole-team training and retraining on confidentiality, consent and respect.

During training, it is a good idea to use HIV as a specific example. If systems are robust around HIV, they are probably robust across the board, because HIV is a condition where confidentiality and privacy concerns are most heightened.

Dealing with complaints

Ensure that if things do go wrong with confidentiality, the problems are addressed and patients feel their complaints are listened to.

NAT found that almost a quarter (22%) of respondents had experienced breaches of confidentiality by healthcare staff, usually hearing staff comment on their HIV status in a public or semi-public space.

Importantly, when things did go wrong, people living with HIV often felt their complaints were not taken seriously, or they were dissatisfied with the outcome - however, most did not report the incident at all.

This needs to be addressed if patients are to have faith that GPs take confidentiality seriously. If a complaint is made against the practice, there must be strong procedures in place to deal with it. Even something as simple as a poster or information about how to make a complaint being displayed in the surgery can reassure patients of their rights.

Conclusion

As greater data sharing among healthcare professionals is encouraged, the NHS must take steps to ensure protocols and procedures to maintain confidentiality are not weakened and are followed consistently in all settings.

There is also far more to be done to reduce HIV-related stigma and increase understanding about HIV in the NHS, so HIV patients' trust in healthcare professionals is not undermined.

Patients need to be better informed about confidentiality and their rights, including how to complain about breach of confidentiality.

The implementation of measures to address these concerns is vital because changes to the NHS, as well as an ageing demographic, mean people living with HIV are increasingly accessing healthcare outside the HIV clinic and GPs are expected to play a far greater part in their overall care.

Dr Ford-Young is a GP in Macclesfield, Cheshire, and a member of the NAT clinical advisory group